21 months,wakeups, losing hope

I could use some encouragement and/or advice. I’m in a bad streak of waking up in the middle of the night with cortisol surges. 2am, 3am, 4am, every night. I feel so deteriorated mentally and physically. I look very aged. I can’t afford to take any time off of work to rest. This is absolutely killing me. 21 months? Really? I don’t have the words to express my shock and anger at my situation. Please help if you have advice on how to stop this madness.

There used to be a guy named Siggy on here who had horrible insomnia. He does come back to answer questions. Here is his success story: http://www.benzobuddies.org/forum/index.php?topic=183087.0

 

I hope he can help you! He had to work, also, and had a very difficult time.

I wouldn't freak out about wakes ups.  They are normal especially as you age.  I still wake up 2 - 3 times most nights and I am 37 months off. It's how you deal with it that matters.  I still get 6+ hours almost every single night and some nights 7-8 hours.  If you freak out about waking up, it will only ensure you won't go back to sleep.  Just relax and try not to worry about sleep.  It took me a long time to do that, but that's how my sleep slowly came back.  It was a combination of time and not giving a rat's butt if I slept or not.  I had about 70 zero nights or nights of no perceived sleep and many 1 or 2 hour nights over a 10 month period.  Sleep comes back.  It may never be perfect, but what in life is?

 

I do my best not to get angry, but after 21 months the frustration is hard to tamp down. I just want a night of deep sleep. I understand how not giving a f whether you sleep or not helps. I’ve done that.

DBM, I too am in a persistent insomnia wave, approximately a year from when I began to have some decent sleep. It all went away after two weekend trips last fall and other than a very occasional night of 4+ hours, I only sleep 2-3 hours of broken sleep a night.  Like you, I am two years drug free in November.

It is difficult not to lay awake feeling frustrated at not sleeping, when I do feel so very tired.

I've tried everything with mixed results.

 

It’s tough, nightengale. I had one or two week-long streaks of good sleep and the difference it made was amazing. I really need it to happen again. I feel like my brain and body are deteriorating. And the exhaustion .... unbelievable.

I know you have thought about all this and heard about this but how is your diet? Are you taking in things that might affect the way the brain is healing? What about stuff like MSG, caffiene, nicotine, sugar and gluten? If you are like me and took medicines for an extended period of time then it will probably take a long time for the brain to heal. I know that they say certain vitamins can slow the brains healing during tapering or post tapering so if you are comsuming lots of neuro stimulants like the once listed above then it might be slowing the healing progess as well.

 

 

 

Now, I am just thinking out loud here and its just an idea. Hope it gets better for you.

Hey ocean,

 

My diet is low carb and clean. I don’t drink, no nicotine, no gluten, no MSG, no sugar, no caffeine. No fun! Haha.

Yeah it sucks. I dont eat any of it either. My diet was pretty good before but now I eat beyond clean. I would kill for a plate of pancakes. :[

Maaaann, me too. And ice cream and a bunch of MSG-filled Chinese food. And a French press full of coffee the next morning.

Keep going and keep the disipline you will be healed one day.   

 

 

I hope so. All this permanency talk on the other threads is freaking me out....

I would avoid those threads that say people never heal.  I would bet the farm that most did not have a good pre-Benzo baseline to begin with.  Healing doesn't heal any pre-existing condition or other medical/psychological issue or illness.  It's all based on many factors such as genetics, diet, general health, exercise, etc.

Thanks, ThEwAy. There’s a lot of anger swirling on another thread right now and it’s pretty discouraging. I’ll just avoid that mindset and focus on the fact that I’m better than I was 21 months ago.

I hope so. All this permanency talk on the other threads is freaking me out....

 

I dont believe it is permanent. I think there are times when some have some longer term healing than others but there are some that have been on these medicines longer than others and higher dosages.

 

I believe are bodies and brains are highly capable of healing and adapting. I have watched some pretty inspiring stories over the last year since I have been going thru this. I always tell people about two people Bob Cafaro and Terry Wahlz. Bob cafaro had MS and had 50 lesions on his brain and spinal cord. He was going blind and he decided that he was going to heal himslef. Here is his tedtalkx 

  Its called The Psychology of Beating an Incurable Illness | Bob Cafaro | TEDxCharlottesville  if you dont want to click the link.

 

Terry Wahlz also had MS and healed herself. She was in a tilt wheelchair and started doing research (she was a doctor) and she starting be able to slowly heal herself. Here is her story

Its called Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity  If these people can heal their MS then we can heal from this.

 

Those two tedtalks I watched over and over when I was really bad. And a think about these two. They were healing their brains and so are we.

 

Good luck

Nothing will make you feel better about the insomnia, the waking up with a jolt every couple of hours - I'm there too. The aching muscles and joints, feeling disconnected from everyone and everything. Maybe once or twice a month, I actually get an almost decent sleep. All I can say is maybe tonight will be one of those nights.

 

I had my doctor get competitive with me when I mentioned that tapering off of valium was stressful. I was hoping for some understanding and I got "you think you have stress well let me tell you..." . I'm glad my husband was in the room with me because I don't think anyone would have believed that level of unprofessionalism if I hadn't had someone to witness it.

 

This is why we join a forum like this. I'm still rattled by my latest doctor encounter. In the 10 minutes she had for me there just wasn't room for compassion.

 

I hope we both get a good nights sleep soon.

Nothing will make you feel better about the insomnia, the waking up with a jolt every couple of hours - I'm there too. The aching muscles and joints, feeling disconnected from everyone and everything. Maybe once or twice a month, I actually get an almost decent sleep. All I can say is maybe tonight will be one of those nights.

 

I had my doctor get competitive with me when I mentioned that tapering off of valium was stressful. I was hoping for some understanding and I got "you think you have stress well let me tell you..." . I'm glad my husband was in the room with me because I don't think anyone would have believed that level of unprofessionalism if I hadn't had someone to witness it.

 

This is why we join a forum like this. I'm still rattled by my latest doctor encounter. In the 10 minutes she had for me there just wasn't room for compassion.

 

I hope we both get a good nights sleep soon.

 

Dont feel bad. I had a doctors appointment yesterday and he basically told me he didnt want to see me anymore. This started last sept when I started having problems with my medication and he just blew me off and said that I was paranoid. Now that I am going thru withdrawal he told me yesterday that muscle pain cannot come from medicines. Then when I disagreed he said "believe what you want".

 

Its all been a long story but they have tried to get rid of me a couple times. Doctors only want you as a patient if you shut and take your pills.

Hoping to join in this thread....almost three years out, still on doxepin and Neurontin and continuing to experience waves that are mostly sleep related.  These two medications have helped a lot but now the heart pounding sensation (and hearing it in one ear) is taking front and center stage.  At this point if there is a 4 hour stretch of decent quality sleep I'm grateful.  Having a decent meal at night - but not too close to bedtime - is helpful, but I am very familiar with the waking up starving between 1 -3 am and having to eat.  ?cortisol issues - perhaps.  It's helpful to just get up, have a snack, do Pilates stretching, write in a journal, read, meditate and not obsess about the situation. The latter is the hardest.  Just in case you're not aware, the Benzo Free podcast is really helpful, supportive and informative.  New podcasts are released every Wednesday. Don't look to your doctor for support (unfortunately):  that's where this forum is needed. There is a ton of ignorance in the medical world about benzos and an unwillingness to be open minded to what patients are telling them  about w/d sx.  I was in the medical world for over 30 years and saw this first hand.  Patients are our greatest teachers, if only people would listen.  As hard as this is, never lose hope. Believe those who've gone before us and know the health and happiness that awaits.  Take things a day at a time - sometimes an hour at a time when things are really difficult.  Breaking the cycle with a trip to the seashore or a peaceful woodland setting might be something to consider.  Good luck.  ps - Feel free to write down stream-of-consciousness thoughts in the middle of the night and send them along:  I don't look at electronic devices in the evening but would happily read them and respond the next day.  Recovery is an impossibly long and lonely process.